My journey started with my Mom when she just didn't seem herself anymore. It was little things, like forgetting to pay bills, repeating things over and over and not being able to write anymore. I thought it was just normal forgetfulness at her age. Then came the diagnosis, 11 years ago, that she had early onset of Alzheimer's disease. I'm sure the earlier stages started a few years before that.
We started attending seminars on Alzheimer's together. I tried to get hold of all the information I could. Mom was very worried about having this terrible disease. After a time, I could not take her with me. I could already feel I was starting to miss her. A lot of the things we did together were no longer possible.
She wandered away from her house during the middle of the night in her robe and slippers. She locked herself in the garage many times. She would change the temperature in the house and be constantly hiding things. She could no longer be alone. How she hated losing her independence. She did not want anyone staying with her, but could no longer live alone.
I tried taking her to a day care center. Mom was really happy at first, but seemed to get angry and annoyed and tried to leave the center. They no longer wanted her there. My Mom was one of the most easy-going people you would want to meet. She loved people! She got along with everyone and was always willing to help others. Mom always had a great smile; it would light up a room. The new day care center was much better geared for her needs. She would never sit still while there and was always looking so very lost. She could not take part in many of the activities. Mom always loved music, arts and crafts, but everything was much more difficult for her now. It would just break my heart watching her. I would drive her to the center each morning and sometimes she would look so frightened.
She was having more difficulty walking. I would stand in front of her holding her hands and guiding her. She would shuffle her feet along. Then one day she fell while trying to get up from the chair at the center and broke her hip. I knew this would be the beginning of the end. She had surgery (hip replacement), and during surgery she suffered a heart attack. I stayed with her at the hospital for 2 days. She was not able to speak anymore, and I knew they would not be able to communicate with her. While I was there in the hospital, she aspirated. It was so scary! After 4 ½ days, we moved her to a nursing home for her rehab.
I knew her Alzheimer's was too severe and she would never walk again. She spent one month in the nursing home and there was nothing else they could do for her. All I wanted to do was to bring her home. On the day she came home, I was waiting for her to be transported. When she was wheeled into her kitchen, she looked all around and gave me the best and biggest smile. I knew then I did the right thing for her. She knew she was home. I will never forget that moment.
Mom was put on hospice that day she came home. Now it is almost three years later, and she is still with me. She cannot walk or speak or feed herself and is incontinent. Some days are better than others. It is so hard on her family to watch her like this. We are from NY originally and my children, now parents themselves, were very close to her and my dad.
My Dad passed away 6 months after we moved them here. My Mom would take my son and daughter all over NYC when they were younger to see all the sights. They both remember how Grandma could take them anywhere on the subway. Such a great memory for them, along with all the wonderful holidays spent together. All of this is so important for me, knowing she has enjoyed her grandchildren and especially her great-children now.
Mom doesn't recognize me all the time now, but she does know my voice. When she smiles it is worth a million words. I will never ever regret keeping Mom at home and caring for her. This is what she would have wanted, she deserved it and I love her deeply. This has been my Mom's and my journey together. I will be here with her to the end. If there is anything good to come from this awful disease, it is the wonderful, caring people that have come into our lives through hospice and PASSPORT. I will always remember their kindness.
Story submitted for the Ohio Department of Aging's Family Caregiving Story Project.
For caregiver assistance, please call your area agency on aging at 1-866-243-5678.
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